Caryn Franklin: My double life as a carer

Caryn Franklin used to present the BBC's Clothes Show, but behind the scenes she played a very different role – caring for a partner with MS. She talks about how his illness shaped her thinking about the body, so central to her career in fashion

Fashion expert Caryn Franklin at home in west London. She was awarded an MBE in the Queen's 2013 New Year honours list. Photograph: Chris Floyd

In her late 20s, Caryn Franklin fell madly in love. Mandu Saldaan was a few years younger. "Mandu was this very politicised, handsome young man and I was this easy-going middle-class girl. He was mixed race and proudly working class, a writer from Hackney, working on a film called Young Soul Rebels, which was all about race and music. It went on to win the critics' prize at the Cannes film festival. I was so attracted to his thinking. It was a brilliant intellectual lust."

From the outset it was not a relaxed relationship and Caryn wasn't sure it would continue. "There was this one thing he would do which made me feel very special. He would just grab me and hold on to me in the street. He was always telling me that he didn't like public displays of affection, so I thought, I'm that special that he's hugging me in the street for five minutes.

"What I didn't know was that he was already having numbness in one of his legs. He needed me for balance."

"The diagnosis was basically: 'Sorry, you've got MS. There's nothing we can do. When you need a wheelchair, you will come back and tell us, won't you?'

"That was it. We had only been together for six months and were already struggling to get on. But I didn't think about that. I just went into Nurse Caryn mode for the next four years."

By the time the Cannes film festival came around, Mandu was too ill to go.

"He didn't have any support. His mother was in the US, he has no siblings and no father. So he became my charge. He was losing the use of his eyes and his legs. It was a crisis situation. I was in south London and he was in north London and needed help getting around, so it made sense that we moved in together. By then I was driven by the desire to make everything better for him. It never occurred to me that I could leave or that I should leave, even though the relationship was in tatters."

They set up home in Hackney, east London. Leaving became even less of an option. "He stopped earning. The despair and the depression kicked in. So I was financing both of us. I was never planning to go on the telly but at this point we were looking at big Harley Street bills and television was offering more than magazine work. I had this surreal life where I was on primetime telly every week and returning to this war zone where his frustrations about his health hung thick in the air. It became a very destructive environment for both of us."

By this point, Caryn was presenting The Clothes Show on BBC1, which ran between 1986 and 1998. As life at home became increasingly difficult, she had an idea that gave her hope. "Deciding to become a parent was a conscious choice. I sat down and said to Mandu, 'I have given up a lot. But I am not willing to give this up. And I'm offering you a future here. Here is something that will give you joy.'"

When she went into hospital to have their daughter, Mateda, Mandu was with her. But he was too ill to participate in the birth. "Two months after Mateda was born, we were in crisis. I had a full-time job and took my newborn with me. In the evenings I returned to care for him and we argued incessantly. It brought us to breaking point. I said to him, 'This can't go on any longer.'

"Eventually he went to live with his mother and then into supervised 24-hour care in a specially adapted home. For the last 19 years he has had full-time care."

Caryn, 54, went on to marry Ian Denyer, a film-maker, and they have a daughter, Roseby, 13. Mateda, 20, lives with them in their west London home. Caryn is now known as an activist and campaigner. When she met Mandu in the 1980s she was fashion editor and then co-editor of i-D magazine. She has since co-chaired Fashion Targets Breast Cancer for 17 years, come up with the idea for the Centre for Sustainable Fashion at London College of Fashion and co-founded All Walks Beyond the Catwalk, an initiative promoting "diverse beauty ideals". On 12 March, she will collect an MBE "for services to diversity in the fashion industry".

Behind all this "glamour-with-a-conscience" activity, Mandu's illness has loomed large. For many years she and Mateda visited twice a week. He lost the ability to speak when his daughter was a baby. "Towards the end of my pregnancy, there was a point where I recognised that his voice was starting to go. I felt the urgency to keep some part of him for Mateda to know. I said, 'Put your voice on tape.' And I would say, 'You're a writer, write to this baby.'

He never managed those things. At the point where she was learning to speak, he fell silent. So she has never had a message from him and has struggled to make a connection with him.

Caryn Franklin in the early 90s with her former partner Mandu Saldaan and their daughter, Mateda

"When she was little we would take him out in his wheelchair and she'd sit in his lap, even though the tremors meant that she would sometimes get knocked in the face. When she was 12 and he was very poorly, she plucked up the courage to say, 'I find it so hard to see him like this.' And I decided to honour what she was asking for.

"For years we both visited frequently. Now I mostly see him alone and, yes, a great deal less. I often find myself thinking that the gift he wanted to give his child is not the gift he has ended up giving – Mateda has seen all her life the example of a body in deterioration so she understands what happens when a perfectly healthy body stops serving you."

This has been the backdrop to Caryn's campaigning stance on fashion. "It was an education about the body for me. What happens when the body can't support you any more? I became so grateful for my health because of this daily reminder of what happens when it is not there. That has always informed how I approach what I do. Fashion is not just about superficial messages defining appearance. It's also about personal identity and self-esteem."

She lectures design students about airbrushing, the power of imagery and the need to cut clothes for real women, not just for size zero mannequins: stealth feminism she calls it. It's all part of this drive to celebrate diversity in all its forms, she says. "I'm just one of those people who needs a purpose. I always think, what am I doing and why am I doing it? What I love about fashion is that you can celebrate being an individual.

"We have this culture completely in service to profit and return, which depends on one rigid physical ideal. But I know everybody gets something out of seeing a broader range of bodies, skin tones and ages – because they come up in the street and tell me."

"I have had this amazing education in a way. When I first met Mandu he ramped up my thinking. It was completely linked with falling in love. He had this razor-sharp brain, which would always get to the bottom line. That was one of his sayings, 'Babes, what's the bottom line?' He would say it in this really thick Hackney accent. He would laugh at me and say: 'Here comes the BBC presenter, voice of the Empire,' and mimic a 1950s debutante accent."

Mandu is now immobile and fed through tubes. "There was a time when Mateda was six that we thought he wouldn't live much longer. He must have an incredibly strong body that he's still here in silent dignity all these years later. He can barely communicate but has an incredibly strong will to be here."

In his own family, Mandu's illness has left a powerful, positive legacy.

"Mateda has said that she feels like she's one of the only ones in her circle who doesn't have body-image anxieties. She'll tend to think – as I do – if only you appreciated what your body can do instead of wasting your time on minor imperfections! Mandu's influence has been a gift to both of my daughters. Because Roseby grew up around him too. We didn't know it would turn out to be a gift from him. But it has, and that is something for us all to celebrate together."